Teresa Dellar on the philosophy of hospice care, the importance of community, and the need to put palliative care on the map
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(From left to right: Teresa Dellar, 听Sandra Watson)
鈥淗ere, you come in through the front door and you leave by the front door. We continue to treat the person with respect, and when a person is leaving they deserve the same warmth and caring and love that they came in with.鈥�
By Devon Phillips. Teresa Dellar, motivated by the flawed healthcare system that she witnessed as a hospital social worker as well as her own personal drive to give the dying and their loved ones the best care possible, co-founded the West Island Palliative Care Residence (WIPCR) 14 years ago. As Executive Director, Teresa possesses a leadership style that blends creative networking and fundraising talents, a deep respect for all her colleagues, a wacky sense of humour, and a strong vision of universal palliative care. I met with Teresa in her office at the WIPCR in Kirkland, Quebec.
Q: Congratulations on your recent fundraising Ball for the West Island Palliative Care Residence (WIPCR).
A:Thanks! We had a lot of dignitaries who came and a royal couple. We had the Queen鈥檚 eldest grandson Peter Phillips and his wife Autumn. The dignitaries included Otis Grant, Anthony Calvillo, and Alvin Powell, and some Major Brigadiers of the Royal Canadian Army as well as four ministers and their body guards. And Dr. Bernard Lapointe, Director of Palliative Care McGill, was introduced to the 520 people in attendance. 听We were able to raise a record amount of just over $500,000 net for the Residence. We are part of the community and the community never lets us down.
Q: How much do you have to fundraise every year?
A: Three million dollars in total. It鈥檚 a huge commitment and we do this year after year. As you can well imagine, the Ball takes us months to organize but the results are the reward. You have to have fun to do fundraising. 听People are not going to come if we bombard them with sad stories all night. Palliative care is an important topic and an important part of life. 听We believe you can help and you can have fun.
Q: You mentioned the importance of community. What do you mean by that?
A: The community has adopted the residence so everything we do, we do with the community in mind. 听We educate the community about palliative care and we hold a lot of community events. Fifty people recently came to hear palliative care psychologist Johanne de Montigny speak. 听And we have 270 volunteers. You know it鈥檚 their residence, they have a say, and our volunteer coordinator updates them every month by newsletter. We want the volunteers to have a sense that this is their home. They are huge ambassadors and we treat them with respect. Our volunteers are great!
Q: Given the new policies regarding medical aid in dying, do you think that people are clear what the difference is between palliative care and medical aid in dying?
A: It鈥檚 confusing for people. 听People need to know the definitions because sometimes the terms are used interchangeably. 听What we did is we held information sessions to educate every staff and every volunteer. 听We educated them on two things: core values here at the residence and Bill 52. Our head nurse, Rose De Angelis, did a great presentation on what all the terms mean. We educated over 200 people that way. 听What was amazing is that we asked, 鈥淒o you have any questions, and for anyone that does not want to speak up now, Rose, myself and Sandra are available anytime, you can come and see us.鈥� Not one person disagreed with our position. So not only do we have buy-in from our board and all our staff, but also from all our volunteers. 听It is really important to me that we have buy-in from our largest group which is our volunteers. Every time you teach the volunteers something, you are teaching the community because every volunteer who saw this presentation is talking to others in the community
Q: And what is your position at the West Island Palliative Care Residence regarding medical aid in dying?
A: 听Our position is that we recognize that medical aid in dying is the law and we are not going to fight the law, but we do not offer the service of medical aid in dying because it is not within our philosophy of palliative care. As we would not offer radiotherapy or chemotherapy, it鈥檚 not our specialty to hasten death, so we don鈥檛 do it.听
Q: What response do you have for the statement: There is nothing more we can do for you.
A:听There is always something that can be done. We have physician and team involvement, and they speak to the family to say there is always something that can be done. At the end of the day, if the patient鈥檚 symptoms or their pain is not managed, we need to speak to them about palliative sedation. Over Christmas, there was a patient at a CIUSSS in our area who wanted assisted suicide, and when the patient and family were told about palliative sedation, they accepted it. They didn鈥檛 even know about palliative sedation before this. 听So I don鈥檛 ever believe there is nothing that can be done. 听I think that for people who say they want assisted suicide, there is so much more underneath that and it is probably not related to physical symptoms. And that鈥檚 why we have brought in an art therapist who has become such a big part of our team. 听Really a lot of suffering has been worked out through the art therapy program. 听You know when we went to St. Christopher鈥檚 Hospice and found out that they have ten art therapists, we saw the magnitude of the program. I truly believe that a lot of physical suffering is rooted in psychological, emotional, social and spiritual suffering. I had to fight for the art therapy program because it鈥檚 considered artsy fartsy, like music therapy. 听A lot of people see it as the icing on the top of the cake and not everybody believes in the icing and the value of it, but there is value, and sometimes it is the glue that holds the whole cake together. 听Our art therapist is actually a psychotherapist who does art and we have seen amazing things happen to our patients as a result of art therapy.
Q: Can you tell me about the philosophy at the Residence.听
A: We want to work in partnership with everybody in the palliative care network, with McGill, with University of Montreal, everybody, and our goal is not to put this place on the map, but to put palliative care on the map. It is never about the residents鈥� care being better or more appropriate here compared to somewhere else. It鈥檚 that every place plays a role, including the hospitals downtown, and we should all be working together to promote palliative care.听We want people to die well wherever they are and we want to ensure that palliative care is accessible to everyone. 听We even have pets die here with their owners. Recently, the night before one of our patients died, her cat died. 听We called the vet to see how we could make the cat more comfortable and he died very quietly on the bed beside her and the next day the owner died so they died together. It was not expected that the cat would die when they came in. This is not the first time this has happened. We had a dog who never left his owner鈥檚 side and when the owner died, a month later the dog died. We see this all the time 鈥� owners and pets dying together.
Q: I understand you worked as a hospital social worker for many years. What was the motivation to start a hospice?
A: When I was 16, I wrote a story about a girl who did not have a place to die. 听From then on my life story was written. Then when I was a social worker I had to keep sending people down to Mt. Sinai or Notre-Dame-de-la-Merci for palliative beds. There is nothing wrong with these places but they are very far to send people from the West Island. This is after we had gone through all the chemo with them, they were our patients in and out of hospital sometimes for a couple of years and suddenly they are dying and it鈥檚 bye-bye. So I said that I would try to change this myself and if I couldn鈥檛, I would leave my profession because I couldn鈥檛 do this anymore. This was an ethical issue. I could not abandon people that needed us, but my mandate was to move people out of the Lakeshore Hospital. In one case for example, we sent this man who had a 16-year-old daughter downtown to die. His wife had already died. And his daughter, an only child, 16 years old, had to travel downtown by bus to go and see him. It was so wrong. 听
Q: 听There is obviously so much care and respect extended to the dying and their loved ones here.
A: One of my biggest learnings came from Ste. Anne鈥檚 Veteran鈥檚 Hospital because my grandfather died there in 1992, long before we opened. When he died there was a procession to take the body out in full view. To me, there was never going to be a back door here. You come through the front door and you leave by the front door. We continue to treat the person with respect, and when a person is leaving they deserve the warmth and caring and love that they came in with. 听I could never get over working in hospitals all my life that most morgues are near the garbage dump 听潭 听did you know that? I never wanted to have that. There is nothing worse. Nobody deserves that, it is disrespectful.
Q: How did you get the hospice started?
A: I have done volunteer work all my life. I was President of the Beckett Players Foundation and when I found out who was coming to one of our events, I switched all the nametags so I could sit beside the elected official, Russell Williams. 听So he said to me, 鈥淲hat do you do?鈥� And I said, 鈥淚 am a social worker in oncology and palliative care at the Lakeshore鈥�. The night went on and later I said, 鈥淵ou didn鈥檛 ask me what I want to do.鈥� 听And he said, 鈥淥k what do you want to do?鈥� And I said that I want to build a hospice. And he said, 鈥淩eally? Call me.鈥� 听And so I did, and that was that! Russ believed in palliative care right away, very much so. He now Chairs the Champions Council at the Canadian Hospice Palliative Care Association (CHPCA).
Q: How does the leadership work here?
A: We want to lead together. It should never be that I lead the Residence; we lead as a team. We have difficult decisions to make sometimes like last week when we had six referrals and only one bed available. I don鈥檛 have all the answers nor should I. I do not know how to do everything, 听but don鈥檛 tell my husband that because he thinks I do! We need to make sure that everybody has a say. This is our community project.
Q: I understand that you co-founded the Residence 14 years ago and have served as the Executive Director ever since. What鈥檚 your wish list for palliative care at this point?
A: We have two projects on the table right now. One is that we have 14 beds in another building that costs a lot to rent, so we are looking to consolidate and have the team all under one roof. 听Also, we want to partner with McGill around education and research. We want to lend the space for people to come and do education here. There is a huge need in the community and we get calls every week. We have in the past had people come from long-term care centres like St. Andrews for stages but the problem is that we don鈥檛 have the manpower to follow up and mentor them.听The population is aging and people in the long-term care facilities have not been educated around palliative care so we, the palliative care community, need to help people die well in other places beside here, for example at home. We can never take everybody and it鈥檚 not our goal. We have a full-time nurse that job shares and who goes over every single day to the Lakeshore Hospital to help people over there that we can鈥檛 bring here. But that takes money and manpower, and just like everybody else, there鈥檚 no money and there鈥檚 nobody to do it, but we are trying anyway.
Q: Do you think there are societal changes in how people think dying should take place?
A: First death happened in the home, then death happened in the hospital, and now there are few beds in hospitals, so death has to move back home. 听The baby boomers changed the way we came into the world with birthing rooms and home births and everything, and the baby boomers are changing the way we are leaving the world. I think the change is really motivated by baby boomers who want to leave a legacy, and make sure they die well which means where they want and how they want, in a dignified manner and not just in a hospital room. 听When I talk to the funeral homes, they tell me that the baby boomers are changing the way funerals are done. There is a lot less use of funeral parlours, and more use of community centres. Places like yacht clubs now rent space for funerals! And why not, if that鈥檚 what you loved and where you belonged.
Q: Does the government ever look to you for leadership?
A: Yes they do. Every health minister has been here except for the PQ. 听Dr. Bolduc definitely came and Dr. Barrette was here. And the government sends people to visit. We get people from Rimouski, people from everywhere wanting to duplicate things. The door is always open. We share best practices and we are always looking for best practices. We are going to the UK next month, Sandra, Rose and myself to visit hospices including St. Christopher鈥檚 in London. We should always be striving to be better, always striving to learn, always networking to be better. 听Every time you talk to someone you can learn something. 听And this is the most important lesson: Always make sure that what you are giving away or what you are sharing is something you鈥檇 want. So if something isn鈥檛 good enough for you, then it鈥檚 not good enough for the person in front of you.
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